Sunday, May 4, 2008

Another sleepless night, another epiphany. Somewhere in the witching hour (from 12 to 3 the time when you can count on Faith being restless, every night) in occurred to me; we're actually doing this, and we're doing it pretty well.

Just when I thought she was going to settle down and I was going to be able to finally get some sleep, her feeding pump went off- I got up to switch it off when I realized I left the medicine port open on her feeding tube, thus all 180ml's of her feed was in her bed. Rookie mistake...I thought. Time to strip the bed, change her clothes, and restart her feed. As I was threading her ventilator tubing through her PJ's I remembered how this would happen almost every feed the week after she underwent her g-tube/trach surgeries. "I can't do this anymore" I cried to Faith's nurse as I was covered in her stomach contents. "I can't take care of my own child..." Flashback a week earlier when Faith's neonatologist came in and told us that he had scheduled the tracheotomy surgery...."No!" We cried..."No....we can't take care of a baby like that....." One of Faith's nurses reassured us.."YOU are going to be the expert...YOU are going to be able to come back a year from now and teach us all about trachs and g-tubes." As nice as this sounded I didn't believe her...there's no way we could learn all there is to learn about taking care of a medically fragile child.

We've had a lot of visitors to the house lately, most everyone comments on how much we know, how amazed they are that we do all we do. The comment always makes us feel a little uncomfortable...of course we do all that we do....how else would we live? It's the typical stuff that scares me...feeding a baby food with a spoon, burping them, giving a bath in an actual bath tub.... We can change trachs, suction, pull out a resuscitation bag and start bagging Faith without blinking. It's the normal stuff like changing crib sheets that gives us headaches.

It's 2:05 as I struggle to get on end of the crib sheet over the corner I glance at the IV pole attached to Faith's vent...time to change the inhalation bag that drips into her heater....I'd much rather do that..I call to Brian in the next room.."honey can you please help me with these stupid crib sheets.." He groggily stumbles in, tries to force the corner end of the sheet over the edgesees that there is water built up in the vent tubing, stops what he's doing and disconnects the circuit and empties the water. It's ironic- the things we'd rather do. For the life of us we can't figure out why crib sheets are so difficult to put on and have to be so tight.......oh yeah....suffocation hazard.....risk of SIDS....things we don't have to worry about b/c our baby breathes through her neck on a machine....for a moment we wish we were back at the hospital, where there was an endless supply of sheets and they could easily fit over any bed... Ok that's not realistic..I guess we're going to have to doing this normal parenting stuff on top of everything else...we'd rather just have to do the everything else...who wants to be normal anyway?

It's 2:20 now...I'm suctioning Faith as Brian attempts to put the sheets on our way- he rips the sides, and says, "I'm done!" He takes her feeding pump, dumps the formal in, primes the line, hooks it to Faith's stomach and heads back to bed. Phew.....those sheets sure we're hard.

We can totally relate. I still remember the first time Hannah threw up and I freaked out and said I can handle trachs, suctioning, oxygen, feeding tubes, but puke! I do not know what to do. It is all a matter of perspective and isn't it amazing how yours can change in an instant!

So glad that things are going well. She is amazing and hopefully your nights will calm down soon. Oh the joys of children. They have to keep us on our toes.

We thank God that you are home and doing well. Feeding tubes and all. (rookie mistake I think not, we still do it and it has been four years.)

I've been following your blog since the beginning. I am so thrilled to see pictures of beautiful Faith and see how she is thriving at home...I also had a preemie. She was home with a gtube and I remember well leaving the port open and feeding the crib instead. Crib sheets are impossible. When I changed them the first time, I actually called a friend and asked what the trick was! no trick, they are difficult. I found layering my daughter's sheets was a big help. I would use a pad (I didnt use these but they are the same thing http://www.toysrus.com/product/index.jsp?productId=2792359) on top of the sheet, then a second sheet with a pad on top. If my daughter threw up (before the nissan and g/tube or I left the port open, it was much easier to cleaan. These sheets are new. I wish I had had them http://www.sleepwellbaby.com/ProductDetails.asp?ProductCode=CS-QZP

You are not alone! I don't think anyone likes to change crib sheets. I always dread washing the twins' sheets and all their crib bedding. And it never fails that as soon as I wash them and get their beds back together there is another poop, pee, or puke accident. Hang in there guys. Parenting is tough and I have SEVERAL moments when I've wanted to throw in the towel, but then when I've had time to calm down I realize that this is just a season in my life and that I should embrace the good and bad. You all are in my prayers and just remember that it's ok to take a moment and go somewhere to scream or cry for a while during these frustrating times.

I "get it" guys. You are doing an awesome job with Faith. As silly as this may sound ... I'm very proud of you. What you are doing can be truly understood by so few (although, it can be appreciated by many). I know how difficult your life is and I also know that you would go to the ends of the earth for your beautiful daughter.

On February 4th, 2007 our little butterfly Faith Edona came into the world 15 weeks premature. At 25 weeks gestation she weighed 1 pound 6 ounces. This blog chronicles the ups and downs of life with a medically fragile child.